Partnering with Patients & Families


Partnering with families involved several strategies throughout the two years. We recruited family members of recent PICU patients to serve as family advisors. They participated as members of the advisory group, attended focus groups, and/or served on teams to develop policies and materials. With the family advisors, we developed a feedback survey that is distributed to families following their child’s stay in the PICU.

We used the feedback we gathered from families to inform several areas of the program.

  • We instituted a grant-funded Parking and Meals Assistance program for families of patients who have spent at least 72 hours in the PICU and voice a financial strain. During the first year and a half of the program, we were able to provide 390 vouchers to 143 families. The vouchers are worth $8 and can be used at the parking deck or hospital cafeterias.
  • Focus group participants chose a journal to give to parents with longer stays in the PICU (funded through another institutional grant).
  • Family advisors wrote advice and guidance for other parents about what to expect during their stay in the PICU from their own experiences. Based on several requests, we included resources that allow families to support each other as well as financial tips. This information is included on the PICU website.
  • Through the PICU Family Update policy, we established the expectation that every family of a PICU patient should receive a daily update from a doctor and a nurse. The policy was developed as part of a Six Sigma project to improve communication between the health care team and families. Feedback from staff and families was that a more proactive approach to communication was needed. The Six Sigma project team included a family advisor as well as two bedside nurses, a fellow, the pediatric chaplain, and a family-centered care specialist.

Results & Lessons Learned

We measured patient and family satisfaction by 1) the percentage of people completing the feedback survey who said they would recommend the UNC PICU (mean 100%) and 2) the number of complaints reported to the Patient Relations department, which decreased from a mean of 1.9 complaints per month to a mean of 0.7 complaints per month.

As a result of the Six Sigma Family Communication project, 66% of families had daily documented communication from a doctor AND a nurse, a statistically significant difference from a baseline of 14%.

Finally, staff perception of patient and family centered care improved as indicated by a feedback survey conducted pre- and post- implementation of the strategies described above. Improvement was seen on all items:

  • Open, honest, and clear communication among care team members and families.
  • Partnering with families in the decision-making and provision of care.
  • Policies and programs to promote family involvement.

More respondents reported that the PICU is doing above average or excellent (with patient and family-centered care) based on their experience in the PICU.

Although feedback related to hospital facilities can be difficult and take longer to address, we were able to respond to feedback from families about the PICU family meeting room by including it on the list of budgeted updates last year. The room was enhanced with new flooring, new furniture, and fresh paint. The many requests for sleep accommodations for family members will require a longer-term effort.

Our efforts to improve partnering with families in the PICU had widespread impact within our institution and led to program team members’ participating in the Institute for Patient and Family Centered Care intensive training seminar. As a result, there is a coordinated effort across hospitals to partner with families and identify staff roles to support these activities. The family centered care specialist from our program team is highly involved with this effort and was instrumental in obtaining a grant to support the development of the patient and family centered care program in N.C. Children’s.

We learned that identifying family members who are willing to help and participate in these efforts is relatively easy. However, coordinating their involvement is more difficult and time-consuming on the program management side. We found it challenging to schedule focus groups in order to accommodate various schedules, but even when we had low attendance, the feedback we received was forthcoming and extremely valuable. We found it effective to follow up with individuals who were not able to attend the focus group and gather their feedback through email or phone calls.

Partnering with Patients and Families Tools

PICU Questionnaire
PICU Family Update Policy
Ways to Participate in Your Child's Care
What to Expect in the PICU
Josie King Foundation (Care Journal and free iphone app)
Partnering with families staff survey